September 18th is Usher Syndrome Awareness Day
Celebrating our Growing Global Community
Usher Syndrome Awareness Day seeks to bring attention to the most common genetic cause of combined deafness and blindness. By raising awareness around the world, we connect those living with Usher syndrome and accelerate research towards treatments and a cure.
What is Usher syndrome?
Usher syndrome (USH) is a rare inherited condition - passing from parents to children - that impacts three major senses in the body: vision, hearing and balance. It is estimated to affect at least 25,000 people in the United States and over 400,000 worldwide. There are three clinical types of Usher syndrome: Type 1 usually causes profound deafness at birth, vestibular (balance) dysfunction and progressive vision loss; Type 2 usually causes moderate to severe hearing loss at birth and progressive vision loss; Type 3 usually causes later onset progressive hearing loss and progressive vision loss.
Why September 18?
In 2015, the Usher Syndrome Coalition, an organization of individuals and families working to build the global USH community and speed the search for a cure, declared the third Saturday in September as our global “Usher Syndrome Awareness Day.” This day falls near the autumnal equinox in the northern hemisphere, marking the start of days that contain more darkness than light - a powerful metaphor for the threat of Usher syndrome.
In support of the Coalition's community-building efforts, here are a few ways you can get involved this year:
- Ask your state, town or region to recognize Usher Syndrome Awareness Day: Check out this guideline for requesting a state proclamation from your governor. (If you have initiated similar proclamations or activities recognizing Usher syndrome in your country or region, please let us know so we can share with the community!)
- Become an USH VISIONARY: Sign up to make a monthly donation and accelerate research by connecting the global Usher syndrome community.
- Create a fundraiser on Facebook in honor of the Usher Syndrome Coalition on Usher Syndrome Awareness Day.
Are you planning any events on or around Usher Syndrome Awareness Day this year? Let us know and we'll help spread the word! Share your efforts on Facebook, Twitter and Instagram using the hashtag #USHDAY.
Need a little inspiration? Check out some highlights from past Usher Syndrome Awareness Days:
Highlights from Usher Syndrome Awareness Day 2020
Official Recognition of Usher Syndrome Awareness Day:
State Proclamations designating September 19, 2020 as Usher Syndrome Awareness Day: Alabama, Maryland, Mississippi, Oregon, and Virginia. Special thanks to the members of our USH community who helped make this happen: Kathy Thompson (Alabama), Laura Ross (Maryland), Danay Trest (Mississippi), Meagan Moore (Oregon), and Girl Scout Troop 1673 and Peggy Borst (Virginia).
Senator Ron Wyden, the original Member of Congress to get Usher Syndrome Awareness Day entered into the Congressional Record in 2015, brought us back full circle, highlighting Usher syndrome in his statement for the Congressional Record on October 22, 2020. Read Senator Wyden's statement here.
Representative Jim McGovern (MA) submitted a Statement for the Congressional Record. You can read McGovern's statement here.
Thank you for sharing your stories through social media about living with Usher syndrome during the current COVID-19 pandemic. If you want to catch up on the stories shared, they are highlighted on our Instagram account (@ushcoalition). Look for the Highlighted Stories labeled "UshDay2020"
The Usher Syndrome Society will be exploring life with Usher syndrome through a series of heartfelt conversations with those experiencing Usher syndrome from around the world. They will be sharing stories throughout the year and the first story is available to view here.
Usher Syndrome Awareness Day in the Media:
Take a look at some events that took place in 2019 in recognition of Usher Syndrome Awareness Day:
September 14: Camryn's Race for Usher Syndrome | Roanoke. Virginia
September 21: Celebrate with friends and ProTactile ROCKS!! | New York City, NY
September 21: 5 Points Music Foundation to Honor Usher Syndrome Awareness Day with Ana Popovic and New Initiative | Roanoke, Virginia
September 21: USH One See 5K & 10K | Lafayette, Louisiana
September 21: Usher Syndrome Awareness Rally | National Stadium, Surulere, Lagos State, Nigeria
- USH Awareness Day Proclamation | Mississippi
- USH Awareness Day Proclamation | New Jersey
- USH Awareness Day Proclamation | Middletown, NJ
- USH Awareness Day Proclamation | Pennsylvania
- USH Awareness Day Proclamation | Wayne County, PA
- USH Awareness Day Proclamation | Virginia
- USH Awareness Day Proclamation | Minnesota
- USH Awareness Day Proclamation | Washington
- USH Awareness Day Proclamation | Ohio
Are you planning any other events around Usher Syndrome Awareness Day? Let us know and we'll help spread the word!
Thanks to your support and dedication to introducing the world to Usher syndrome, the Coalition is able to continue our work to help and connect all in our community. We look forward to celebrating this day with you.